‘Always Fighting’

Gareth M. Thomas

Why is it so hard to get the resources? You feel like you’re totally up against everybody. The State, the education authorities, whatever. […] It’s just a fight, it’s always fighting.

This extract is taken from an interview with David. He is the father of Louis, a 15-year-old boy who has Down’s syndrome. David acknowledges ‘fighting’ as one of ‘the two things I would say to new parents of children with Down’s syndrome’ (the other is to ‘be completely open’ and to not become preoccupied with milestones). This observation prompts Sarah – Louis’ mother and David’s partner – to disclose how they have faced two tribunals in recent years: one for appealing a Disability Living Allowance decision, and one for Louis’ educational needs.

I heard similar stories in a series of interviews, undertaken between February 2019 and June 2019, with parents of children with Down’s syndrome. Funded by The Sociological Review as part of their Kick Start Grants Scheme[1], this study intended to identify how parents reflected upon a growing presence of positive disability imaginaries being enacted via a range of popular media (e.g. TV/film, newspaper articles, blogs/social networks) and across widely distributed networks of people with shared experiences of disability. While such outputs may be identified as a symbol of tolerance and acceptance, little research has addressed how people with disabilities and/or their allies produce, and understand, configurations seemingly designed to enact a more positive, visible, and rounded portrayal of disablement. In this study, I wanted to dissect how parents of children with Down’s syndrome made sense of the formulation of new imaginaries of ‘difference’ and alternative engagements – or ‘disability worlds’ (Ginsburg and Rapp 2013) – which depart from historical narratives of disability as pitiful and ‘a terrible unending tragedy’ to be avoided (Kafer 2013: 2).

Drawing upon 22 interviews with parents, and informed by a short ethnography of the World Down’s Syndrome Congress in 2018, I explored how such configurations chimed with, contradicted, and complicated their everyday lives, particularly in a context of a dwindling and progressively hostile welfare system, rising disability hate crimes, the institutional abuse and premature deaths of disabled people, and persistent inequalities in health, work, and education.

During interviews, it was clear that both mothers and fathers recognised that there is, broadly speaking, a more positive and visible account of disability – in which their children are given a presence and future (Latimer 2000). They were keen to emphasise the ‘normality’ of both their own and their child’s lives, even if they simultaneously troubled what we perceive as ‘normal’ (see: Davis 2014). Parents discussed positive perceptions of their child, particularly within their own families, friendship groups, and local communities. They felt that their child ‘defied stereotypes’ of what is to be expected of disabled people, whilst concurrently denouncing ‘stereotypes’ of their children as ‘happy and loving’ (an [infantilising] stereotype, it seemed, of all people with Down’s syndrome).

Yet while some parents felt coverage of people with Down’s syndrome in cultural outlets could be perceived as positive, they complicated this narrative by raising several concerns about such configurations. For instance, they pointed to concerns of ‘tokenism’ and the promotion of a deficit model of disability (i.e. something catastrophic to overcome). Moreover, parents felt that within such configurations, there is an overwhelming focus on well-resourced and ‘exceptional’ (what some called ‘high-functioning’) people, and particularly children, with Down’s syndrome. These emerged without recognising the diverse realities and challenges of parenting a disabled child, with parents describing such depictions as ‘sanitised’ and ‘accessible’. Valerie claimed:

When you’ve got the mums that I meet who are pregnant or who’ve got new babies, for them to see positive images on TV, and that general level of acceptance, is really positive and it’s really helpful for them. I think sometimes then when I speak to mums of older children, particularly those who are struggling so much more, so those ones that have ended up with a dual diagnosis, more complex needs, it can be quite challenging. To look at those images, and it’s all lovely and it’s all positive, and all children with Down’s syndrome are fabulous, and they’re all swimming in the world championships, and they’re all actors […] and actually I think for some of those families, they’re very under-represented, aren’t they? […] it’s not universal is it?

Similarly, while parents heralded some coverage of people with Down’s syndrome as admirable and a move in the right direction, they simultaneously described how this did not always reflect their lived realities. Linda said:

Sometimes you have to show that it’s all well and good looking cute on This Morning, but I don’t think we’re getting to the crux of the argument. […] We need to be going to the higher end, the best education, the best skills, the best workforce. That person needs help. […] We don’t need to be on TV. We need the [resources] so you don’t have to fight. It shouldn’t be down to parents to have to provide anything. The services are there. Why can’t we access them? Why is it so hard? […] Christopher doesn’t drive you nuts. It’s those things around it that drive you nuts. […] I think by fundraising and doing stuff, it’s lovely to have a day out but I don’t really need that. What I need is the fact that I know he’s going to have a good provision in education. What I need is that he’s going to have speech and language therapy.

Throughout interviews, parents acknowledged the presence of more positive and visible configurations of their children whilst simultaneously sketching out how parenting a disabled child involves a series of ‘fights and battles’ (e.g. healthcare, education, employment, welfare). Positive experiences were shared, such as supportive health care professionals and accommodating schools, yet many parents expressed their discontent and irritation about ‘bureaucratic’ obstacles and insufficient access to resources[2].

Parents’ discussion of ‘fights and battles’ also highlighted a classed and gendered dimension; women are often on the frontline of these conflicts, and parents recognised the benefits of their own or others’ class and educational privilege when dealing with institutions (i.e. having the appropriate time, language, and habitus). The extract from David, cited at the beginning of this blog post, was followed by him claiming[3]:

[Sarah and I are] quite lucky. We’ve got our own business. We can choose what time we do stuff. Some parents don’t have the facilities, the resources. How will they cope? I have no idea. Because everybody we see, they say, why is it so hard?

In this study, then, I found that whilst there is evidence of collective resistance and ‘revolting’ (Tyler 2013) against damaging depictions of disability, the (positive and visible) popular narrative of Down’s syndrome is complicated by a wider context in which people with disabilities experience hostility, exclusion, and indifference. Parents felt that positive ‘news stories’, whilst applauded, equally threatened to gloss over a wider social and political context in which disability is treated as an unvalued bodily state. Using the work of Hamraie (2017: 3-5), we can identify how these configurations arguably amount to an ‘optics of disability rights’, hiding and normalising the ‘persistent architectural, attitudinal, and economic barriers that disabled people continue to face’. Academic colleagues have, for many years, shown not only how ‘ways of being in the world are valued or discredited’ (Garland-Thomson 2015: 300), but also how the everyday realities for disabled people contradict harmful understandings of ‘grim imagined futures’ (Kafer 2013: 2). Nonetheless, this study – by highlighting the tensions and contradictions felt and experienced by parents of children with Down’s syndrome – shows how disability worlds are made ‘habitable’ (Friedner 2018; Friedner and Cohen 2015) in one moment, yet ‘uninhabitable’ in another.

Gareth M. Thomas is a Senior Lecturer in the School of Social Sciences at Cardiff University. He is a sociologist interested in disability, medicine, stigma, reproduction, and technology.

[1] Title: ‘Counter-Configurations of Disability: A Qualitative Study with Parents of Children with Down’s Syndrome’ (October 2018-September 2019, £4,195).

[2] Some parents also highlighted the upset caused by completing forms in which they must ‘almost exaggerate’ (Stephanie) or ‘make out the worse-case scenario’ (Linda) to obtain assistance in a context of diminishing support.

[3] In response to such struggles, parents identify how off/online networks made up of ‘sympathetic others’ (Goffman 1963) is essential for sharing advice, resources and tricks of the trade (see also: Thomas 2014).

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